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Hello and welcome to Not Just Patients, a podcast where we break barriers to meaningful patient involvement in healthcare. We’re your hosts, Caitlin Rich and Clarinda Cerejo. We’re both rare disease patients and qualified patient experts. And we are so much more. Join us and our guests as we challenge patient stereotypes, highlight successful collaborations in healthcare, and share energizing tales of turning adversity into advocacy.
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Bolstering Rare Disease Research through Collaboration┃Jo Balfour
59:43
59:43
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Join us for this special Rare Disease Day episode of Not Just Patients, where we speak with Jo Balfour, Managing Director and Co-founder of Cambridge Rare Disease Network (CamRARE), about research in rare disease. Jo is the driving force behind the CamRare's innovative events program, designed to raise awareness about rare diseases and encourage cr…
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Designing Patient-Aligned Clinical Trials┃Maya Zlatanova
59:55
59:55
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59:55
Join us for an insightful conversation with Maya Zlatanova, CEO and Co-founder of FindMeCure and TrialHub, as we discuss patient-aligned clinical trials that consider both scientific rigour and patient needs. Maya is a health-tech entrepreneur and pharma industry speaker with over 15 years of experience in feasibility, operations, and patient recru…
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Not Just Patients LIVE | Danielle Drachmann and Sumaira Ahmed
1:24:29
1:24:29
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1:24:29
Join us for this special (unedited) recording of Not Just Patients, which was streamed LIVE on LinkedIn! To celebrate our 10th episode, we were joined by two incredibly inspiring advocates, Danielle Drachmann and Sumaira Ahmed. Listen to this uplifting, raw, and real conversation as these two amazing women share how they turned their adversity into…
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Advancing Equity, Diversity, and Inclusion in Healthcare┃Prof. Lara Bloom
59:49
59:49
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59:49
Join us for a compelling conversation with Professor Lara Bloom, President and CEO of the Ehlers-Danlos Society. A strong patient advocate, Lara has a passion for pushing boundaries and fighting for progression DE&I in healthcare and LGBTQIA+ rights. Throughout our discussion, we dissect the complex relationship between health equity and inclusion …
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Demystifying regulatory affairs and HTA┃Anke-Peggy Holtorf
1:01:48
1:01:48
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On this episode, Dr. Anke-Peggy Holtorf joins us to help demystify the complex processes of regulatory affairs and health technology assessment (HTA) and explain the crucial role of patients in these processes. Anke acts as Secretary of the Board at Health Technology Assessment international and is a Steering Committee member and project coordinato…
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Navigating Digital Health and Health Data┃Mark Duman
1:00:38
1:00:38
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1:00:38
On this episode, we speak to Mark Duman, Chief Patient Officer at MD Healthcare, about digital health and health data, how digital therapeutics get developed and approved, and how challenges around access and equity can be navigated. Mark is a clinician, management consultant, and patient advocate who works with several healthcare organisations to …
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Medical Publications: From Access to Patient Authorship┃Avishek Pal
1:00:48
1:00:48
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On this episode, we speak to Avishek Pal about how patients can better access and contribute to medical publications. In parallel to his day job as Global Medical Director of Cell & Gene Therapy at Novartis, Avishek is affiliated with the Institute for Biomedical Ethics at University of Basel, investigating how medical research information in plain…
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Embracing Shared Decision-Making in Patient Care┃Dr. Victor Montori
1:00:01
1:00:01
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In this episode, we speak to Dr. Victor Montori about the importance of shared decision-making in healthcare. Dr. Montori is the Robert H. and Susan M. Rewoldt Professor of Medicine at Mayo Clinic. An endocrinologist, health services researcher, and care activist, he is the author of more than 750 peer-reviewed publications and is among the most ci…
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Embedding Patient Perspectives into Clinical Research┃Robert Joyce
59:00
59:00
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59:00
On this episode, we talk to Robert Joyce about the critical role of patient involvement in clinical research and the various ways in which patients can bring rich perspectives to the research and development process. Robert has lived with chronic illness all his life, but following a traffic accident in 2014, he was left with debilitating symptoms.…
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Mobilising Meaningful Pharma-Patient Collaboration┃Bronwyn Lewis
1:01:38
1:01:38
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On this episode, we speak with Bronwyn Lewis, Global Head of Patient Engagement at Boehringer Ingelheim. Drawing on her 20+ years of experience across diverse roles in the pharmaceutical industry, Bronwyn offers deep insights into how the industry is perceiving and responding to the call for deeper patient engagement, the challenges and opportuniti…
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History and Evolution of Patient Engagement ┃Tamás Bereczky
59:26
59:26
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On this episode, we talk to Tamás Bereczky, PhD, about how patient engagement came to be, how it has evolved over time, and what the future will look like. Living with HIV since 2003, Tamás is a stalwart in patient advocacy, serving on various boards and committees, such as the European AIDS Treatment Group and European Community Advisory Board on …
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In this pilot episode, we introduce ourselves, our ideas and aspirations for the podcast, and what you can expect to get from listening. We are excited to bring this podcast to you and hope you enjoy it! Resources mentioned in the episode: - EUPATI Patient Expert Training Programme Have feedback or suggestions for us? We'd love to hear from you! We…
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